5 Month Lung-aversary

Submitted by Laura on Thu, 05/09/2013 - 7:25pm

Wow, April has been quite an interesting month.  If you haven't already heard, on April 18, I had open heart surgery to fix an ascending aortic aneurysm (AAA).  When I went in to have my stent placed, I was in so much chest and back pain, that the doctor suspected something else and ordered a CT scan.  The radiologist found the aneurysm and I was admitted to the hospital on the 16th.  Dr. Schwartz, who performed my X-mas day thoracotomy, also did my AAA surgery.  He explained that from the March bronchoscopy, fungus was found growing in my lung, so from that infection, it most likely traveled through my blood and attached itself to the spot in my heart where the heart/lung bypass had been attached to my aorta during the lung transplant.  Apparently, bacteria and fungus love to attach itself to weak/damaged tissue, so an infection started and created the aneurysm.  Ironically, the doctor thinks the scar tissue from my lung tx helped keep the aneurysm from bursting.  The aneurysm was the size of a small orange!!!!!  So, God must be looking out for me.  I was in the hospital for 9 days total. Once at home, I actually got back on my feet pretty quickly.  I do have some incision chest pain, collar bone pain, and leg/groin pain, but I am able to breathe better, cook some dinners, pick up, and make it to doctor's appointments.  I am doing really good, the doctors were pretty amazed how well I am doing after 3 major surgeries!

Since I got home, Joe and I did some house shopping, went to a bridal shower, and walked a 5K in honor of my friend's son, who has William's Syndrome.  After the 5K, I felt pretty good, however the last three days my right side sciatic nerve is seriously causing me tons of pain and some loss of ability to walk!  After 2 trips to the Chiro, I am finally better today with only some minimal twinges. =)  Other than this, I am planning a graduation party for my cousin and brother-in-law and getting ready for summer!

Wish me luck and pray I have no more of these setbacks!!!  I still need my stents, but the doctor has not cleared me yet for additional procedures, so we are waiting on that.  I will try to keep all of you posted!

Laura XO

Almost 4 Months Post Transplant

Submitted by Laura on Mon, 04/01/2013 - 6:01pm

Last blog was on 2/11 - for good reason - I've been out celebrating my new lease on life!  February and March were pretty successful months. I was doing a lot more and all without oxygen: Hanging out with friends, going to the movies, going out to eat, exercising, going to the dog park, and normal daily tasks.

Theresa Caputo!

I was well on my way to feeling normal, until my last Bronchoscopy on March 14.  While results came back no infection and no rejection, the doctor did perform a small procedure.  Apparently, the left connection of my lung to my sternum was inflamed, so the doctor inserted a balloon to open up the main bronchial tube more.  Since that procedure, I've had breathing issues.  The amount of air I have in my lungs when blowing out is going up, but unfortunately the amount of air I can blow out in 1 second has gone down to levels as low as when I first got my lungs.  The transplant team is concerned and are trying to figure out what to do.  One possible treatment is always going to be plasmapheresis for humoral rejection.  My suggestion is to re-bronch and see if that bronchial is still closed in.  My next appointment is April 5, so hopefully we'll have an answer that does NOT include plasmapheresis.  I have a lot of concerts, girls nights, volunteer opportunities, and other plans coming up, so I better not be stuck in the dumb hospital or lose too much function that I have to start wearing oxygen outside! I started wearing my oxygen when sleeping again because my sternum feels tight at night and laying on my side. I have to realize I'm always fragile and there is always a chance for setbacks.  I just have to remember my motto, "go with the flow".  Easter was nice.  My dad cooked a delicious ham and I made broccoli casserole, garlic potatoes gratin, and sweet potatoes - oh and red velvet cake.  My dad made a great pineapple upside down cheesecake!  All that cooking - my back hurts today!!!

Laura Rocking out with one of her FAV bands, Orgy

On another note, April is National Donate Life month. It's a chance for organ recipients to recognize their donors as well as promote organ donation.  April 16, I will be volunteering at Loyola handing out information for organ donation.  I hope I can give someone information that changes their mind or convinces them to sign up!  On April 18, there is a memorial in the hospital chapel in celebration of organ donors and their recipients.  I will be there to say thank you to my donor, thinking about the letter I want to write to their family, and supporting other families touched by organ donation.

Laura and Dr. Wigfield

Also, thank you to all of you who donated to the fundraiser.  I had no idea how much this fund would help me and Joe and keep stress out of our lives.  Dealing with the health status ups and downs are stressful enough, on top of everyday issues.  The fact that I don't have to worry about medical bills is a wonderful gift.  So, again, thank YOU for the help you've provided.

XO Laura

Post Transplant: 2 Month Lung-aversary!

Submitted by Laura on Mon, 02/11/2013 - 11:15am

Wow, has it been a whole month since I've blogged??  Sorry, everyone!  Let me fill you in.  After the last blog, I was released from the hospital on 1/16.  I went home for 2 days and on my check up appointment 2 days later, I was experiencing pretty severe shortness of breath at home, and on 1/18, I was re-admitted to the hospital with Acute Rejection (which can be cured by receiving very high doses of steroids) and Humoral Rejection, which is kind of rare.  Humoral Rejection means that I received antigens from my donor lungs which prompted my immune system to create antibodies to attack my new lungs, since they were foreign in my body.  To cure this, I had to receive a central line in my neck and go through a process called plasmaphoresis.  Basically, they hook me up to a huge machine that filters the plasma out of my blood and it's replaced by clean albumin.  This process is done every other day or every 2 days.  I had 6 sessions, plus 2 other injections that help fight the rejection.

 I was in the hospital for this process for another month and discharged last weekend.  I was in the MICU, which are very small, dark rooms for a whole month.  I didn't go on the computer, I hated watching TV, I was very down...this is why you guys didn't see a blog - I just was so stir-crazy I couldn't stand it!!!!!  Joe came down every day after work, even just to see me for 2 hours - such a good husband, I can't even express what a support he's been.  Selina came down a few times, which was a joy.  No one else could visit b/c they were all sick!  But, I actually didn't want anyone to visit, I was just so down.  It was one of the hardest 2 weeks of my life.  I had so many set backs, I just felt like I couldn't take 1 more!

Well, finally I was discharged last Saturday.  The first couple days home was very hard, trying to acclimate to my medicine/health schedule. I take upwards of 70 pills a day, I still have my picc line and I infuse 1 IV antibiotic at home. Last week, I went to the hospital 3 times for more outpatient plasmaphoresis and some other injections.  They pulled out my neck line on Friday, thank goodness.  First shower in 3 weeks!!!!!!!!!  It felt sooooo good!!!!  This week, I have 2 doctors appointments.  I feel like my biggest success is since I was hospitalized my lung function continues to go up, so my lungs are looking great in that respect.  I am focusing now on staying active at home and sticking to my tight schedule.  Some accomplishments include: cooking dinner, baking muffins, going on my first small outing without oxygen, eating way better.  I continue to look forward to do more and do my treadmill longer!

I am finally getting a taste of normalcy and I am loving it.  After all I've been through, it sort of already feels in my distant past.  I can't really remember the pain and suffering - it kind of just dissipates - I can think about it happening to me, but I can't FEEL it anymore, if that makes any sense?  I see why people can go through 2nd transplants!!!

So that's the latest on me.  I am looking good, I just have a little bit of chipmunk face from the steroids, but it's kind of cute, I suppose.  

I've already become excited again for online shopping (eek), so I think that fact screams "I'm better!"  Excited for life again.....

Laura XO

Post Transplant: I didn't go home =(

Submitted by Laura on Wed, 01/09/2013 - 8:56pm

The last few days have been a blur!  I am stable in terms of pain and lungs, so it feels like I should have been home by now, but I'm still here at Loyola.  My liver enzymes have been slowly coming down, so the doctor tried to introduce posiconazole last night, and my liver enzymes spiked again.  Therefore, they have definitely figured out the high liver enzymes are due to anti-fungal drugs.  I have to stop taking those, and breath in Amphiteracin B, which is a nebulized anti-fungal drug.

The last few days have basically consisted of tweaking my insulin pump settings overnight and praying it brings down my sugars enough so I can go home.  The last 3 days haven't worked, so I am hoping we can figure this out by Friday, so I can be discharged and be home for the weekend!  Tuesday was a very frustrating, because they were 95% sure I would be going home.  Nurse Erin came in the morning and was getting me all set to leave, but then I went down to get an ultrasound of my legs to check for clots (I have none), and when I came back, I found out I wasn't going home. I cried....and cried....I was pretty upset, but after thinking about it, it makes sense that I need to stay.  I don't want to go into some diabetic coma at home.  So, I'm okay with all of it....just as long as I'm home on Saturday! =)

I've been walking pretty far.  I did 6 loops around the floor, which is 2/3 of a mile.  Joe has visited each night.  I had a great time meeting Gina Lombardi, who is the friend of another transplant patient I met online.  Gina visited me 2 days ago, brought me some wonderful nail polish, and we had a great time getting to know eachother a bit.  Funny how lung transplant helps you make new friends!!!  My aunt Jane visited me today and we had a nice time together.  She brought me a late birthday gift, and I will be enjoying my favorite tea in my new teacup!  Thanks Janie-bird =).

Overall I'm in a good place.  I get better each day!  The only thing that I cannot stand is this hospital food.  I just really don't have an appetite.  I started a 'meal list' for home, planning what dinners I want when I get home. Yum.  I am going to ask everyone to pray that we figure out these sugars and I can get home by Saturday!

Also, I am praying for everyone that they don't get this dumb flu that is going around!! 

Post Transplant: Saturday, Jan 5 - up and down day

Submitted by Laura on Sat, 01/05/2013 - 11:32pm

Today was an interesting day.  Nutrition stopped my all day long g-tube feedings so I could start to gain an appetite and ordered the normal night tube feeds (4 cans over 8 hours).  So, now I have to be better about eating this hospital food, since that is one of the items I need to be able to do before they will discharge me from the hospital. Last night, I didn't sleep very well.  Apparently, the nurse and respiratory therapist noticed I was having labored breathing around midnight (I don't even remember the therapist being here, lol).  I woke up a few more times and the doctor came in here and it was decided to bump my oxygen up to 3 liters and keep up with the Dilaudid IV pain medicine throughout the night.  I also had a 101* fever overnight.  I woke up at 7:30 short of breath as well, but decided to get up and start my day.  The tech came in to test my blood sugar and it was 500 (normal is 90-120)!  We realized there was miscommunication and I never got insulin to match the overnight tube feeds!  I am guessing this may be another reason I was so out of breath and maybe a reason I had a fever.  OOPS.  I didn't have a fever the rest of the day.

Around 8 the liver doctor came in....my liver enzymes have been high and they're not exactly sure why, so they took some blood samples.  It is SLOWLY going down, but they asked a lot of questions about family history with the liver and stuff.  Since I've never had liver issues, they are betting it's one of the drugs I'm on, but they are still trying to figure out which.

Endocrine came in to discuss the OOPS 500 blood sugar and I suggested now that I'm on the regular schedule I would do at home, why don't we just transition back to my insulin pump and let me manage all of that.  Her boss agreed, so I am back on my pump, managing my own insulin, and that is another step towards going home.  I also am doing my own enzymes when I eat, so that's another big change.

The pain was a little better today.  After the last dilaudid I had this morning at 7:30, I didn't take it the rest of the day.  I relied on non-narcotic pain meds and heat pads.  I had some breakthrough pain, but I'm really trying to ween off the IV drug.  I also was experimenting with the different pain meds to see which ones really work and which ones don't, so I was taking them alone and assessing their effect on my pain.

No one visited today, so I skyped with a few friends who cannot visit because they're sick...that was fun!  Pulmonary doctor didn't have much to say, I'm progressing well.  Just walk, walk, walk!  And do my incentive spirometer.

So anyway, I will keep working at it...pray that my little fever was nothing and my liver enzymes continue to decrease....these things will help me get home!!

Post Transplant: An update over the past few days...

Submitted by Laura on Fri, 01/04/2013 - 2:58pm

The past few days have been good.  The mornings are very busy!  Joe is back to work and my Mom has a cold, so she is not able to visit.  I asked the doctor how long after her symptoms are gone should she wait to see me, and he said a few weeks!  He said 1 week minimum, but 2 weeks is best.  So, if any of you are sick, or you are getting over something, we have to wait 2 weeks before seeing eachother....that rule is for the first 6 months, because I am SO very susceptible to infection that one little cold can cause me VERY bad problems.  Because of this, I have decided I want everyone who comes into my room (nurses, techs, docs, visitors) to wear a mask.  I don't want to compromise these lungs one bit!

So the past two days, I have woken up between 7:30-8 am, which is nice, and the pain hasn't been as bad.  They are trying to ween me off IV pain meds, which is the next step to get me closer to going home.  I passed my swallow test for solid foods, so now they are trying to get me to swallow some pills on my own, which is another step to going home.  They are thinking maybe Tue or Wen. next week I may be going home!  I am not getting my hopes up because anything can happen, but that is the path we are on.  The other thing they are trying to do is get me off of oxygen.  Right now, I am on 2 liters.  If need be, they would send me home on oxygen.

So my day consists of trying to pound down some breakfast by 8 am because respiratory comes about that time to do my longest therapy (3 nebulizers, 1 ez pap lung exerciser, and chest PT).  The nurse is around at this time to give me all my meds.  There are 3 different doctor teams that come during rounds all before 9:30 am (when it rains it pours!).  Physical therapy my come at this time to exercise me.  I also have to think about doing my incentive spirometer (a breathing machine that helps open my lungs and get goop up) every hour 10 breaths.  This is all before 10 am.  Then, I have to think about taking walks at least 3-4 times a day around the floor.  My rule is that I have to do all my medical stuff before I can do fun stuff (like getting on the PC).  I must do everything in my power to take care of these lungs and help them get rid of the fluid that is still in there and keep them expanded!

My CT scan reveals a significant improvement after the 2nd surgery, so that is a blessing.  They are more expanded with a little fluid.  I can totally breathe way better, as shown by my decreased oxygen needs and my overall "how do you feel?" question. I have been sleeping well and can even sleep on my sides now!  I think things are moving along at a great pace and I pray things continue to look up and up.

Joe and I received about 1.5-2 hours training last night from the post transplant nurse regarding sanitation, food prep, etc. for when I get home after transplant.  On Monday, I will probably receive the Pill Box training, since I will go home on probably 20 medications that I have to take religiously at the same time each day.  I also will have to take my vitals daily when I get home.  For the first few months, I will probably be on nebulizers and they may want me to use my vest for a bit for airway clearance.  I need to be walking when I get home, so I am happy we have the treadmill! After I go home, I have to come back weekly for 4 weeks for blood work and check ups.  I cannot drive for the first 3 months, so I will need chauffeurs when I need to go anywhere .

On another note, while I am elated that I am doing so well, there is another transplant patient that I've become friends with, Kelly Langs, who was transplanted on Dec 6 at Stanford.  Unfortunately, Kelly passed away on 1/1/2013.  This is just a reminder how fragile lung transplant is and how hard I will need to work to keep my lungs safe, expanded, clear, and free from infection.  Please take a moment to read Kelly's blog by clicking here. I am so sorry this has happened and I pray for Kelly and her family daily.  If you are visiting me, I will ask you to wear a mask, remind you to wash your hands, and possibly ask you to do other things to keep me safe.  Please don't be annoyed or offended that I am asking you to do these things, it is for my protection. 

Also, thank you all so very much for your support for the double your dollars.  I can't tell you how much you all mean to me and how much your words on facebook, emails, phone calls really lift my spirits.  I appreciate all of you so very much.

Anyway, lunch is here, my hour downtime is over before I start the next course of treatments, walking, medication, nap, and a visit from Grandma.  Talk to you soon!

Laura

Post Transplant: Ice Ice Baby...

Submitted by Laura on Mon, 12/31/2012 - 2:58pm

I am sorry I've been missing for a while! The past week has been busy, draining, scary, emotional and happy....quite a journey.  On Dec 23rd, I woke up suddenly at 6 am, sweating and feeling like there was someone sitting on my chest.  Obviously my first thought was heart attack.  The doctors ordered a CT scan with contrast and found there was some fluid build up around my heart. This can happen with transplant, so they started out by just watching my triponin levels and monitoring me.  My lungs looked the same - not yet expanded and pockets of fluid build-up.  This was causing shortness of breath and pain.

So, Christmas Eve I was starting to become very short of breath and had a lot of pain.  I was about an 11 on a scale of 1-10.  Christmas day, the doctor suggested we schedule a thoracotomy for Dec 26, which means they would open my transplant incision and clean out the fluid from the 'pockets' and clear out the fluid around my heart.  In speaking with Dr. Schwartz, I explained I could simply not go another day with how I was feeling....I couldn't breathe, I felt like I was quickly deteriorating and it was too scary to wait.  He agreed it was better not to wait, so he offered to perform the surgery that day (Christmas).  Within 2 hours I was wheeled off to the OR with Joe and my Mom waiting for me.

I was sedated and had a breathing tube until Dec 28.  Someone messed up and wasn't paying attention...the sedative stopped working around 4:30 am and I woke up barely able to breathe, hands tied down, not able to reach the nurse button, my room door was closed so no one could hear me bang the bed.  I sat there watching the clock for 30 minutes before anyone noticed I was awake.  That was pretty scary for me.... Around 7 am, they started the process of weaning me off the breathing tube. They fully removed the tube around 7:30 am.

So.....I basically started the healing process all over again. The pain was pretty intense, so they put in a new epidural line and tried a bunch of pain meds to find the right mix.  I couldn't do much because the pain was so bad. I had 5 chest tubes.  They removed 2 on the 29th. I started to feel better on the 30th, once they removed the other 3 chest tubes, they do cause a lot of the pain.

My x-rays are looking good, my lungs are now expanded!  They are expanded more now than they were after transplant, so the thoracotomy was successful. Today they removed my neck IV line and the pee-pee catheter.  I am slowly losing lines =).  They do want to take another x-ray because the doctor did not hear as much air in the lower left lung than he does in the lower right, so they are investigating this.

I will be seeing Dr. Wigfield today and he will decide if I can go back to the Tower 5 rooms, out of ICU.  I don't anticipate any road-blocks to this, but Wigfield may have a reason to keep me in ICU one more day.  I did go for a walk this morning, and I didn't have to stop to rest!!  My O2 saturation didn't even go down on my walk....slow and steady baby! I'm so happy about this.  The nurses and staff seemed to be really impressed with how independent I am and keep mentioning that over and over, so that makes me feel really good about my progress.  I still have this crazy pain under my left armpit/boob that breaks through every couple hours, but the Delauten pain med seems to help this.

So, overall, I am back to doing great again.  You are probably wondering my I named this blog Ice Ice Baby?  Well, to show you how well I am doing, I am crossing one goal off my list.  I DANCED!  I danced and didn't lose my breath and I didn't cough!  Vanilla Ice was on The View and I caught his performance of Ice Ice Baby and I Chair Danced that song out baby! Even the nurse saw me dancing and said, "So this is the REAL Laura, huh?" I am counting this chair dancing! My arms up and down, my torso swaying, head bobbing....It felt good.  When the song was over I just looked at Joe and broke down crying.  I just can't believe I did that and didn't lose breath, my saturation stayed the same and I didn't cough. It was amazing.  As Steve would say, "It f***ing blew my mind". I am crying as I write this, I just cannot believe what I just did today.  I am not even thinking of this setback now - I am just looking forward to meeting more of my goals.

The next step is to pass my new swallowing test so I can drink and eat again.  More to come on that!  Also, I need to start learning to breath like a normal person again.  I am trying really hard to not rely on pursed lip breathing, but instead use my diaphragm to breath correctly.  This is REALLY hard to do, to retrain yourself to breathe....it's supposed to be natural!  I tried to focus on this on my walk this AM and I think that's why I was able to get all the way around without stopping.

Cross your fingers I get to go back to the hotel like rooms on Tower 5 today =)  Thank you for your support and comments on facebook.  I do read them, but just don't have the energy or time to respond to everyone. It is seriously always busy here, someone is always in my room needing to test me, talk to me, exercise me, etc.  But, please know your comments are so very encouraging and I get such joy reading them.

Thank you again to my donor and their family, this is such an amazing gift.  I love all of you,  XO

Laura

Post Transplant: Saturday, 12/22 and I'm Feeling GOOOOOOOD!

Submitted by Laura on Sat, 12/22/2012 - 10:15am

Hey everyone!  I had a great day yesterday....you all know there is no infection and no rejection....yes!!!!!...but I made even more strides.

I got ALL of my chest tubes removed yesterday about Noon!  It is SO FREEING!  I then got moved to 5th floor tower, which is out of ICU! It is like a hotel up here, they are new rooms and OH so nice!  If I have to be here a while, this is where I want to be, for sure.  Nurses again up here are very nice and I trust them.  Of course they have more patient to nurse ratio, so I have to plan a little ahead of time if I think I might need something from the nurse, but when they are here, they're GREAT!

My wonderful friend, Jenni, came by last night and took me on my night walk. We had coffee talk and it was so nice to visit!  Laughing and no coughing has been restored!  I am even wearing my own PJ's now! No hospital attire needed!

I am still in a little pain, but removing those tubes helps A LOT with pain, and the feeling like I'm a normal person in normal clothes, eating....I swallowed my first pill since the surgery!   

I know, it seems silly getting so excited over pill swallowing, but this is a first of many things I need to re learn how to do before I can go home.  Doing each of these things makes me so HAPPY.  I am fully content right now.  My breathing is better, I was able to turn my oxygen down!

I am having a few visitors today (you can visit if you're not sick and you don't bring your kids~) and am super pumped to show my new self off to my friends and family.  I am at peace today....I hope for more postitive things to happen as long as I can keep up my walking, therapy moves, and take naps!  My mind is so clear and content, I literally can't write very well, I notice my train of thought is just whereever today.  Carefree!   I'm in love!   

Joe slept here overnight in my room!  It was so nice waking up to see his face, I've missed that for 12 days now. I miss his face.  I don't think anyone needs to sleep here ongoing....Joe can get his puppies home, I know he misses them =).

Okay well, logging off for now, looking forward to the day.  Love, Laura  xxoo

Post Transplant: Friday's Update, so far!

Submitted by Laura on Fri, 12/21/2012 - 1:36pm

Hi everyone! Laura here!!!  So good updates for today, your prayers are working.  My pain has been less over the last two days...I am about a 5 in pain and anticipate that it will be way better once I get these 2 last chest tubes removed.

GREAT news this AM, the biopsy came back and I am NOT in rejection!!!!  I am so overly thankful for this news.....to sum it up, no infection and no rejection.  At this point, they are thinking it was such a stressful surgery to my body (3.5 hours to get my right lung out of my body, layer by layer, cemented to my chest wall), that it's just taking longer to heal and for fluids to reabsorb.  They are thinking of pulling the chest tubes and seeing how simple exercise, walking, physical therapy, and good nutrition will help my lungs fully expand.  In a couple weeks, I could go back for a small thoracotomy, where they open a small part of the incision and suck out a little fluid to help me expand....but that isn't until far down the line.

I will be moving out of the ICU probably later today to 5th floor, which is more room space, all redone and has I think 24 hour visiting hours.  Wayyyyyy more comfy.  I don't think I'll be home for Christmas, but that's okay~I'm not even thinking about that.   I am simply thinking about my blessed birthday gift and selfless donor and donor family. I have so much love in my heart for this person (I have another person's lungs!?!?!?  What!?!??!  Wow!).

So, I will continue to push on hard with my exercises.  The more un-sick visitors I get, maybe the more exercise and walks I will go on =).

Thank you for everyone's continued thoughts and love.  I really appreciate you all!!!!!  

Laura XO

Pictures from my first walk, lots of cords!!:

Happy Thanksgiving!

Submitted by Laura on Sat, 11/24/2012 - 2:10am

Hi everyone! I hope all of you had a wonderful Thanksgiving and fun weekend ahead.  I wanted to update you on what I did for the week.  To everybody's surprise, I hosted Thanksgiving this year...I got plenty of "are you sure?", "that's a lot of work.", "that's too many people.", etc.  I talked it over with Joe and we both agreed that it's more important to spend the time with family and not worry about how much 'work' it will be.  If we didn't get the furniture dusted, then oh well.  If I couldn't manage to make 2 pies, then oh well.  This year was a go with the flow year.  If you know me, then you know it would have been very hard for me to go with the flow...I had to have everything planned and perfect.  Being in the situation I'm in now teaches you to abide by those interesting life lessons....the life lessons that you know in your mind, but you don't always put into action (don't sweat the small stuff, go with the flow, don't stress).

We were planning to have 9 people, so I grocery shopped a week ahead of time and made a schedule/timeline in advance so I was not trying to do everything in one day.  Major kudos to Joe who did the house cleaning, a LOT of the preparation/cooking alone, and he helped me with most of what I was planning on cooking myself. (Thanks to Mom for cleaning, too!)  I made the vegetable stock over the weekend for the brine. Monday, I made the cinnamon ice cream.  On Tuesday, I took the opportunity to teach my cousin how to make real cranberry sauce (and see Breaking Dawn!).  Wednesday, I made pumpkin and apple pies and sweet potatoes, while Joe took care of the brining, washing our fine china, and helping me set the table.  Thursday, Joe got up and made the stuffing, took care of cooking the turkey, and made me breakfast.  It was a chill day - I even had time to blow dry my hair, which I NEVER do.  After I got ready, Joe made the mashed potatoes and I started the gravy making....we were basically done 30 minutes before guests came!  I couldn't believe it.  I would normally be rushing around, frazzled, stressed....this year felt like such a breeze!!!  (Maybe if you ask Joe, he would say it was a little hard!)  

I had such a wonderful time with my husband over the past few days, working together on almost everything to prepare for our party.  We didn't argue one time (and usually when we're in the kitchen, we'll argue at least once on how to do something my way ).  I really think it boiled down to my attitude (and the fact we have cooked thanksgiving before, so it wasn't a blind run) and that Joe seemed very engaged with me the entire week.  I just had such a wonderful couple days!  Big thanks to my Mom and Aunt Karen for cleaning the dishes, too!

Today, I slept 'til 3 pm!  Ahhhhhhhh...no black Friday for me!  My bestie invited us to her Thanksgiving celebration, so we had a more than stellar meal (she's as good a cook as me!) and Joe and I were the last to leave the party (that NEVER happens), so we had some nice alone time with Stephanie and Noel helping them clean-up and a healthy game of Catch Phrase.  Tomorrow, I think Joe and I will see his Grandma, maybe a movie (Skyfall?)....and Sunday, I will spend time with my cousin, Selina.

Overall, this weekend has really been a celebration for me of everything I am grateful for - truly.  Most of all my husband, Mom, family, and friends!  Who needs STUFF when you have LOVE?

Laura  xo

Why Wait to Give Thanks?

Submitted by Laura on Thu, 11/01/2012 - 11:54pm

It's November 1!  At the end of the month, many of us will be gathered around the dinner table, toasting to family and friends, and sharing what we have to be thankful for.  Why wait until the end of the month?!

First, I am thankful for my husband, who takes care of me on a daily basis -both physically and emotionally.  He washes my tubes, gets my feedings together, makes dinner, walks/feeds the dogs, cleans the house, etc.  Beyond that, he's my partner, in it with me for the long haul.  He never makes me feel like he wishes for a different life. I never question his love or devotion to 'us'.  I have to wonder if this is why I don't think about transplant on most days - because most days are happy and filled with love.  He's on this journey with me and does everything in his power to give me everything I need.  I couldn't be more blessed.  How did I get so lucky?

Second, I am thankful for my Mom.  She comes over every night to do my manual treatment and has been doing this for probably over a year now. Ridiculous, right???  Thank goodness she recently purchased a house only 7 minutes away from me!  You may be asking yourself why Joe doesn't just do my treatment....he does sometimes, but Mom is just better at it - I think it's her shorter, fatter hands!!!  It creates the right cushion and pop.  Anyway, I know she's tired at 9:30 at night and when she is done by 11 pm, she has to drive home and is very groggy!  Her shoulders, arms, and wrists ache from the beating she's giving me for the 1-1.5 hours, but she (mostly) doesn't complain.  She's devoted!  She will help with other chores that I ask her to do and will drive me to my doctors appointments.  I am thankful that she's available and willing to help me and I love her.

Third, I am thankful for my job for offering long term disability benefits and health insurance.  This journey could be a million times harder if these benefits were not available and I am SO THANKFUL for these.  I am also extremely thankful for all of the people that have supported my fundraiser and donated to help with other extenuating costs that will come from my transplant surgery. Thanks to Jeff for running a marathon and raising money for me!!!  I feel a lot of love and prayer coming from all of you! 

Next, I am thankful for my friends and family.  They keep me energized and help me get out of the house!  It's so important for someone who is chronically ill not to lose touch with friends and society, or else it's so easy to become isolated.  For everyone who has come by my house to sit with me, cook for me, bring me meals, visit, take care of the dogs, include me in plans, whatever....THANK YOU.  You really don't know how much a phone call, card in the mail, or a visit to my home really means to me in the scheme of things.  Special thanks to Stephanie and Selina for not minding doing boring things with me a lot of the time. =)  Thanks, Leigha, for all your greeting cards and to Jenni for our Cheesecake Factory dates. Thanks, Auntie Pam - I always know how much you are thinking of me.

Thanks to my puppies, who never see me differently, no matter what physical condition I am in.  You guys make my days bearable with your hugs, kisses, and playful spirits.

Thanks to my doctors, nurses, and pulmonary rehab staff.  Without your care, I wouldn't be here today.  Special shout-out to the pulmonary rehab staff for helping me stay motivated while I workout.  It's easy to dread going to the gym, but seeing you and chatting you up between machines makes me want to come to the gym!  Thanks to the mystery man/woman who pays my gym membership! =)

I know there is a lot of other stuff I would list out if I had more time....but it's 9:52 pm and time for my nightly treatment!  This month (and always) I will be giving thanks for all of the wonderful things in my life and counting my blessings before I sleep.  Ya, needing a lung transplant sucks, but in the grand scheme of things, I say I'm pretty damn lucky for all of the wonderful blessings I've listed (and more!).  So, happy November and Happy Thanksgiving!!!  XO

Am I Losing My Hearing?

Submitted by Laura on Tue, 08/28/2012 - 11:59pm

So, a few weeks ago I noticed that I have been saying, "What?" to Joe a lot when he says something.  I was sure it was because he mumbles or surprises me while I'm paying attention to something else, but since it was occurring more often and one of the side effects of a drug I take is hearing loss, I wanted to be tested to make sure it was not ME.

I had an appointment with the ENT on Monday and he checked my sinuses, my hearing and my sense of smell.  Good news on the sinus front....I used to have nasal polyps, but since I've been doing the antibiotic nasal wash, the polyps have gone away!!!!!!  Yay!  That means less infection that would be able to travel down into my lungs and it also means NO nasal polyp surgery after transplant would be needed.  What a relief to hear that news!  I didn't realize polyps could go away, but I guess they can.

I did mention to the doctor that I do get a strange smell in my nose, and it's especially strong with detergent and soap and asked if it was a good idea to do a smell test.  He agreed, so I sat in a room with a booklet of 40 scratch 'n sniff multiple choice questions and sniffed my way through!  It was kind of hard sometimes, I was surprised that I was contemplating choosing between Rose and Gasoline!  The results had to be tallied so, on to the hearing test, the real reason I was there.

In my mind I was really trying to prove once and for all that Joe needs to speak louder (I want to win!). I sat in the chair and repeated the words the audiologist would say and raised my hand when I heard the beeps.  Back in the room to see doc and get my results.  The hearing test came back good!  I'm well within the normal range, except for frequency of 3000-4000, which I was 25, instead of under 20 on a 100 point scale, so basically almost normal.  I asked if Joe's voice is within that frequency or something, and NO, that frequency is more about hearing the subtle "f, s, t, p" in words like Pharaoh.  So, I said to the doctor, "So, I win?", and he extends his had for the championship handshake, "You win."  All in good fun, but it's nice to know it's not me!

As for my smell test, he said it was calculated that I have 25% smell loss. I think I would have to argue with that number for 2 reasons: some of those scents on the test were not life-like (grapes and cherries smelled like kool-aid, chocolate didn't smell rich) and I am a great cook/baker so I have to know what stuff tastes like and you need smell in order to taste!!  My argument is I'm used to smelling the real stuff, so the fake scents confused me!!!  Until the day my food tastes like crap when I cook I will argue I have not lost quite 25%. 

In the end, the check-up was great.  Still no news on the transplant front...still number 2 for my blood type.  I just continue what I'm doing and staying positive. XO

Don't wanna jinx myself...

Submitted by Laura on Sat, 07/21/2012 - 11:33pm

I don't want to jinx myself, but I've been feeling pretty good this week.  I've had some extra spoons to use this week, I guess!  (See this blog from fellow tx patient re: Spoon Theory).  This week, I spent Saturday mattress shopping, Sunday visiting with my grandma/aunt/mom playing cards, exercised on Monday, ran bedding/pillow shopping errands and got my hair done on Tuesday, completed bedding shopping on Wed. and cooked dinner, saw a movie with Mom Thursday, did bedding laundry and picked up the house Friday in preparation for our mattress delivery, and today cooked breakfast, picked up the house more, dusted our bedroom, went to a brewery and classic car night at Dog N' Suds.  Tomorrow I am contemplating the Museum of Science and Industry.

Now, with all of this extra energy and ability I seem to be having, I also am just WAITING for the minute that I CRASH AND BURN!  With all this activity, I just know it's coming!  However, I'm not going to stop doing stuff and just sit around waiting to be tired - when the crash happens, it happens.  All I can realistically do is be prepared to turn my little butt around and get home for some R & R.  I did have to make some informed decisions regarding WHICH activities I could do today (walking around a fair = no, sitting at a brewery = yes). When you're ill, these are the moments you have to be prepared for and accept.  I just look forward to the time when I don't have to forgo activities because walking from the car to someplace is simply too far.  I can't wait to stop being left out of activities simply because I cannot breathe.

Of course I realize that transplant is not a cure - you're trading one set of 'problems' for another - but if I can breathe easy, I think I will be able to deal with the 'other stuff'.

XO

Wonderful Experience

Submitted by Laura on Sat, 06/23/2012 - 11:40pm

If you read my last post, you may remember that I mentioned Joe and I were going to have a portrait session done last Friday.  We won a dream portrait by photographer and artist Audrey Wancket (you can read our dream wish submission here).  I was really excited and Joe and I worked hard to consider outfit choices and how we wanted our portrait to look using the guidelines Audrey mailed to us when we won. If you check out her website, I think you'll understand why we felt it was a key decision, based on the portraits she does. Joe and I both had 4 outfits that we made sure were dry cleaned and pressed, loaded carefully into the car, along with the beautifully groomed pups (thanks Shear Paradise Pet Salon!).  I expected our session would be maybe 1.5 hours with 1 outfit change.

Audrey's property is beautiful!  Her studio is in a remodeled barn, she has horses on the property, and many outdoor spots that can be used in the photo (we didn't do outdoor because of 1. the dogs attention span and 2. Audrey said outdoors are better in the morning based on sun position - and you know me - I am NOT a morning girl).  Chloe and Butters were immediately in love with Audrey and Kate, her assistant.  The warmness I felt from the two ladies helped ease my anxiety about working with my special needs.

Audrey chose all of the background and props, so it was great that I didn't have to try to tell her what we envisioned, because I actually wasn't really sure!  This is where her great artistry skill comes in.  For the last shoot, Joe and I got to play around a bit with our last outfit choice and our vision.  We got some REALLLLLY cute snapshots of the dogs alone on pedestals.  I cannot wait to see them!

We were there for about 3 hours!  It wasn't all photo taking - there were many breaks where we just sat around and chit-chatted a bit.  Today, I didn't feel sick. I felt normal - this is a testament to how great Audrey and Kate are.  Kate was super helpful hiding my oxygen and bringing it to me for "oxygen breaks", because I didn't want to wear it during the photo.  They were so patient with the dogs and really good at getting their attention for the camera (thanks burp, fart, bird noise, etc. maker machine!).

I feel like I found 2 new friends during this process.  I look forward to returning on July 3 to see our photos and pick which one will be transformed into our dream portrait.  I know we'll never be able to walk away with just 1 picture.....thanks for a unique, personal, and memorable experience, Audrey and Kate!

Not Much To Tell!

Submitted by Laura on Sat, 06/16/2012 - 11:45pm

Hi everyone!  Well, it's been pretty boring around here!  We saw Dr. Wigfield, who will be the lead surgeon taking Dr. Love's place, on June 2.  He seemed very interested in my case and making me comfortable.  He had personality and spunk.  I felt he was just as accomplished as Dr. Love, but he just doens't get/take much credit. NOw that he will be the head, maybe we will hear his name more! He made me feel confident in moving forward with the program.

I spoke to the Procurement Nurse the other day.  I am listed as #2 for my blood type at Loyola and #3 for my blood type in the region, so my time is approaching, slow but steady!  Sidenote, the patient waiting in front of me for lungs received her gift of life on May 18th and is home now and doing fabulous!!!!  I have to keep those success stories in the forefront of my mind.

This Friday, Joe and I have our dream portrait scheduled that we won (thanks to a lot of you guys voting for us!).  Check out the photographer's website: http://www.wancketstudios.com/ and re-read our dream wish submission here. Her photography and art is so exquisite, but ours will be a bit more on the casual side since we are including the doggies!

Joe participated in his first 10K and ran in memory of his Mom.  I am proud of him for training hard and completing it in under 1 hour. WOW! Next, he will be running half marathons and maybe a triathlon!

On the running note, my friend, Jeff, is running the 2012 Chicago Marathon and has generously offered to run in support of Lungs For Laura!  We setup a separate donation page for his run with 100% of the donations going to COTA for Laura Anne M.  What a swell guy!!!! Thanks, Jeff!

So here I am, waiting....bored....living vicariously through others, so please if you are bored too, make a time to stop over!  Keeping positive thoughts here, over and out!

XO

How to Handle Change In Medical Care?

Submitted by Laura on Tue, 05/08/2012 - 3:48pm

So, I found out today that Dr. Love is leaving the Loyola transplant program in June.  One kicker is that I found out from someone who does not even work at Loyola - it was from a third party.  I would have preferred the program sent out letters as soon as this became common knowledge in order to avoid hearsay. This is a big deal to me - a BIG part of the reason I chose Loyola was because of Dr. Love.  I have had a not so great experience with another pulmonary surgeon before, and so this was really important to me to find someone I felt I could trust.

I feel a little lost now.  I hear he's moving to Milwaukee.  I'm close enough....do I maybe follow him there? Unfortunately, Milwaukee doesn't have a transplant program yet (this is why Dr. Love is probably going there - to start one), so following him isn't really an option, in reality. I know I need to 'interview' and give the other Loyola surgeons a chance, but, I was really counting on Dr. Love.  I'm really overwhelmed by this news today and the manner to which I was informed.

I know this is just another bump in the road.  Maybe I will get transplanted before June comes and then I won't have to worry about meeting the new doctor.  This is just a very scary and fragile time for patients and to hear a member that I trusted will no longer be there, creates a lot of anxiety.

I want to add that while the surgeon is an important part of the journey, the after care is managed by a very competent team that I also trust.  After the initial surgery, you work more with the transplant team. Therefore, it isn't ALL about Dr. Love, but it's an important piece of the pie. What to do, what to do......

Ready for May

Submitted by Laura on Tue, 04/24/2012 - 4:49pm

When will this month finally be over?  Not quick enough for me!  Joe will return home from the Philippines and I will go back active on the transplant list and continue my wait for new lungs.  The seriousness of lung transplant surgery has hit me a little hard this month. Before, I didn't really think much about the surgery, recovery, and long term outcomes of the surgery - I focused more on feeling better and doing things I want to do as a result of the successful surgery.  This month, thoughts about the long term outcomes of a not-so-successful surgery have been weighing on my mind. I'm scared. As time goes by, it's becoming more REAL. I will be happy when Joe is home, because I don't think about the surgery so much when he's around.

I haven't felt very good these past two weeks, either, which forces me to think more about being a sick person and the sicker I get, the closer the surgery is - making it more REAL.  Dr. Love said, "if you walk into the surgery, you will walk out of it."  It's the journey after the surgery that I have stuck in my mind....will it be successful, how much longer will I live, will I have rejection, what is rejection like, will we be able to buy a dream home, will we have children, is it fair to have children....at some point I just have to STOP myself from thinking because it's a never-ending spiral of what-ifs.

I just pray that when it is my turn, the lungs are a "perfect fit".  It's a lot to ask, I know.  All I can do now is continue to work 24/7 on staying as strong as possible.  Rehab, treatments, eating, sleeping - that is everyday in a nutshell. All I can do beforehand is get my body to the highest level of health to increase my chances at a speedy recovery.  

Thanks to everyone who has cooked for me, walked my dogs, and called/visited while Joe is away.  I appreciate you all very much.
Laura XO

Is it Adrenaline?

Submitted by Laura on Sun, 03/25/2012 - 11:18pm

I think it's amazing what our body can do in response to trying situations.  For example, I'm sure we've all heard of stories about adrenaline kicking in to get yourself or somebody out of a dangerous situation.

I've been amazed at my body's response these past few weeks to give me just the right amount of drive and energy to take care of myself and Joe.  Usually, I rely on Joe to make dinner, wash my tubes, walk the dogs, prepare my feedings, feed the dogs, go grocery shopping, and clean up after dinner (I know, he's AWESOME).  Joe's Mom has been ill and he has been spending many weeknights at his parent's house taking care of her and recently, been spending almost all day at the hospital making sure she's getting the care she needs.  I was hoping and wishing that I would be able to step up and take care of him during this difficult time, but I really wasn't sure how my body would respond.

Like I said before, it's amazing how mind over matter can sometimes get you through the things you need to get done before you just crash.  While I haven't done all of the things listed above every day (thanks to my Mom for pitching in too), I have done a LOT MORE than I usually do.  I cleaned the bathrooms, made dinner many times this week, did laundry, kept up with all my treatments, washed my tubes, kept the kitchen clean, picked up the house, picked up food for the family and delivered it to the hospital, went grocery shopping today, walked the dogs many times this week (thank you nice weather), kept up with Joe's mail/bills, and exercised.

I am shocked at myself - I've felt really good these past 2 weeks and I am hoping it lasts.  I do tend to crash at night, but at least I've gotten through the day.  I am happy my body is allowing me to give back to Joe all the things he has given to me.  I love him with all my heart and I hope I can be the rock for him, like he has been to me.  Please pray for Joe's Mom and family and pray that I can keep my strength to help my best friend get through this hard time.   XO.